Hope for Ensure Plus diet as a treatment to bring down inflammation

[Susabelle]

Hello everyone,

I’m writing this to provide my recent experiences and with any luck provide some hope to anyone thinking of trying the liquid diet to help with their IBD. I wasn't sure where to post this as it is using diet as a treatment, but went with the treatment section.

Before I provide some back story, let me first give the headline:

** I started the liquid diet to help the steroids bring down my inflammation, when the steroids weren’t working as quickly as they should have been after I was hospitalised with my first flare. With the liquid diet, my calprotectin levels dropped over 3 times more than with steroids alone**


Though my calprotectin isn’t quite in the normal levels, and I’m still on prednisolone and the liquid diet, the difference it has made to my calprotectin levels (and feeling of wellness) has been great.
I couldn’t find much information on those who had tried this before, so if this helps anyone I will count it as a good thing.

Let me give a little more information about how this come about:

• I was diagnosed with indeterminate colitis (Doc’s are reasonably sure it’s Crohn’s Colitis) in Dec 2015. I had no complications and inflammation in my ascending colon only. My calprotectin level was 742.
  
• My GI put me on Pentasa alone, this made my symptoms worse and I came off Pentasa after 2 months when I started having blood in my stool (previously hadn’t been a symptom). My GI decided to stop all medication and see what happened.
  
• Two months later my calprotectin was 810 and I was put on a 5 week course of Budesonide, with Octasa to be started after the course.
  
• I had a severe reaction to Octasa and a week after stopping Budesonide I was in hospital in May 2016 with my first flare. I lost quite a lot of blood and was in hospital for 6 days on Hydrocortisone. Inflammation was now pan-colitis on the scope. GI won’t let me have any more 5ASA’s as I likely have a rare acute intolerance.
  
• I started Prednisolone when released from hospital (1 month on 40mg then a 5mg taper every 2 weeks). Symptoms got bad again around 25-20mg. During this time (around 50 days) my calprotectin dropped 101 (from 581 to 480).
  
• I pushed to see a dietician to discuss going on a liquid diet to help bring my inflammation down. I was referred and then prescribed Ensure Plus.
  
• Over the next 50 days I was on a prednisolone taper to begin with (15-10mg for the first 20 days out of 50), then my GI upped the prednisolone to 20mg for the rest of the 50 days, as the calprotectin wasn’t coming down as much as they wanted it to before they start Azathioprine. During this last month I also started the liquid Ensure Plus diet. My calprotectin dropped 345 (from 480 to 135).

This was a much larger drop that the first 50 days (over 3 times as much), and to me shows that the liquid diet really was helping bring about remission.

It is worth noting that my dietician allowed me to have 2 weak decaf teas with lactose free milk per day, but otherwise I’ve only had Ensure Plus and water. I’ve had less pain and more energy while on the diet and that has helped me stick to it, though it has been difficult.

I’m going to stayon the liquid diet for a while long, I’m also going continue with the prednisolone as the two-prong approach really seems to be working. I will be on 20mg for the next 3 weeks, then taper every 2 weeks by 5mg. My GI team wants to keep me on 10mg for a little while to cross over with the azathioprine.

We are aiming to get my calprotectin under 50, then hopefully the azathioprine will maintain the remission.

My doctor originally advised that the liquid diet wouldn’t work with me because my disease is in the colon, and though I wouldn’t go on it in replacement of medications, it really has helped in making me feel so much better. I did have to push for it, but it has been worth it.

I would definitely recommend this to anyone trying to bring their inflammation down, especially if steroids aren't doing the job as well as they could.

I hope someone finds this helpful, I will provide an update when I’ve been on this course a little while longer, fingers crossed I will be able to report that my calprotectin is under 50!

Best to everyone,

Susabelle

 

[ronroush7]

Hi, Susabelle. I am glad you have had success and I hope it continues.

 

[Susabelle]

Thanks

My consultant was really against the idea of trying ensure plus to lower my inflammation, but seeing how much of a difference it had made, I wanted to share the experience in case it helps anyone else.

 

[ronroush7]

I stopped regular Ensure because it has carregeenan in it but was told Ensure Clear is free of it

 

[Scipio]

I'm not an expert on Ensure Plus, but I've always viewed it as nutrition and hence as a possible treatment for malnutrition, but not for inflammation. Which ingredients or other factors led you to try Ensure Plus as an anti-inflammatory? What made you think it would work?

 

[Clash]

Scipio, polymeric formulas such as Ensure and Boost are often used in children when doing EEN. Studies have shown no difference among the efficacy of EEN with polymeric, semi-elemental or elemental. Studies show efficacy equal to pred in pediatric trials. Although opinions differ on the exact mechanism EEN provides mucosal healing, regardless of formula type.

The studies I refer to are mostly pediatric since my son was a pediatric patient at the time. But there are several articles posted in the EN thread over in the parents section. I'll see if I can pull them and post them here.

 

[Susabelle]

Ronroush, I didn't know about carrageenan. I've just looked on the ingredients on the bottles and it isn't listed on Ensure Plus, so maybe it is the same as Ensure Clear? Or could it be under a different name?

Scipio, it first came to my attention when I read Dr John Hunter's book on IBD. He is now retired but I was referred to one of his colleagues in London when I contacted his old secretary, who I talked about it with, but he also mentioned that it would be less effective with crohn's colitis. In the book Dr Hunter talks about using enteral nutrition (he mentions Elemental 028 Extra in the book) to bring about remission and then use the LOFFLEX diet to maintain. If i remember (as I don't have the book in front of me) he said it should take about 3 weeks to start working, though he had one patient which took 9 weeks to bring his calprotectin into the normal ranges.

My NHS consultant was dead set against it, but luckily the dietitian let me give it a go. Even if the diet alone won't keep me in remission I thought I had nothing to lose by trying - and if it helped, all the better. At worse it is giving my bowel rest and the steroids a better chance of working and since the blood is now gone and the pain has significantly reduced I'm glad I've done it.

When I contacted Dr Hunter's team I did ask for the studies he used to back up his findings and they sent me the following:

Middleton SJ et al. Long-chain triglycerides reduce the efficacy of enteral feeds in patients with active Crohn’s disease. Clin Nutr 1995; 14:229-236.

Riordan AM et al. Treatment of active Crohn's disease by exclusion diet: East Anglian multicentre controlled trial. Lancet 1993; 342:1131-1134.

Teahon et al. The effect of elemental diet on intestinal permeability and inflammation in Crohn's disease. Gastroenterology. 1991;101(1):84-9.

Verma S et al. Oral nutritional supplementation is effective in the maintenance of remission in Crohn’s disease. Dig Liver Dis 2000: 32(9):769-774.

Woolner JT et al. The development and evaluation of a diet for maintaining remission in Crohn’s disease. J Hum Nutr Diet 1998; 11:1-11.

I think I found these through a google search. There is also a paper published online in EJCN http://www.nature.com/doifinder/10.1038/ejcn.2016.74 ‘Enteral feeding reduces metabolic activity of the intestinal micro biome in Crohn’s disease: Observational study’.

I am aware they use this with children, particularly to avoid using steroids. I've been told it isn't used for adults in the UK and USA as it is difficult to maintain. Though in Japan nutritional therapy is used widely as a primary treatment for Crohn's.

 

[my little penguin]

Scipio
Here are links to studies
Most docs don't know why it works but it does reduce inflammation when used as a stand alone therapy but it has to be een ( polymeric semi elemental or elemental )
And tpn does not have the same effect

Exclusive enteral nutrition involves the use of a complete liquid diet, with the exclusion of normal dietary components for a defined period of time, as a therapeutic measure to induce remission in active Crohn’s disease (CD). This very efficacious approach leads to high rates of remission, especially in children and adolescents newly diagnosed with CD. This intervention also results in mucosal healing, nutritional improvements and enhanced bone health. Whilst several recent studies have provided further elaboration of the roles of exclusive enteral nutrition in the management of CD, other reports have provided new understanding of the mechanisms by which this intervention acts.

Exclusive enteral nutrition in children with Crohn’s disease
Andrew S Day and Robert N Lopez




From
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4462720/

More studies
https://www.hindawi.com/journals/grp/2013/482108/

Exclusive enteral nutrition (EEN)
EEN is considered first line treatment for induction of remission in paediatrics.16 In adults there is limited, weak evidence that corticosteroids are superior with response rate on an intention-to-treat basis between 53-80% after three to six weeks of EEN.17-18 Adherence and inadequate dietetic provision may be limiting factors in adult success rates.19 EEN avoids the side effects of corticosteroids and immune modulating agents, helps treat under nutrition3 and is superior to corticosteroid treatment at inducing mucosal healing after ten weeks – 74% versus 33% respectively.20 The mechanism of action of EEN remains unclear and may be due to removal of food decreasing the antigenic load, causing a reduction in intestinal permeability.3

A recent study looking at the effect of using partial enteral nutrition (PEN) combined with a specially tailored ‘CD Exclusion Diet’ led to induction of remission in 70% of children and 69% of adults. Six out of seven patients achieved remission on the exclusion diet alone.21

From
https://www.bda.uk.com/dt/articles/crohnsdisease



Fwiw Ds has used een and the crohns exclusive diet and both have worked

 

[ronroush7]

Ronroush, I didn't know about carrageenan. I've just looked on the ingredients on the bottles and it isn't listed on Ensure Plus, so maybe it is the same as Ensure Clear? Or could it be under a different name?

Scipio, it first came to my attention when I read Dr John Hunter's book on IBD. He is now retired but I was referred to one of his colleagues in London when I contacted his old secretary, who I talked about it with, but he also mentioned that it would be less effective with crohn's colitis. In the book Dr Hunter talks about using enteral nutrition (he mentions Elemental 028 Extra in the book) to bring about remission and then use the LOFFLEX diet to maintain. If i remember (as I don't have the book in front of me) he said it should take about 3 weeks to start working, though he had one patient which took 9 weeks to bring his calprotectin into the normal ranges.

My NHS consultant was dead set against it, but luckily the dietitian let me give it a go. Even if the diet alone won't keep me in remission I thought I had nothing to lose by trying - and if it helped, all the better. At worse it is giving my bowel rest and the steroids a better chance of working and since the blood is now gone and the pain has significantly reduced I'm glad I've done it.

When I contacted Dr Hunter's team I did ask for the studies he used to back up his findings and they sent me the following:

Middleton SJ et al. Long-chain triglycerides reduce the efficacy of enteral feeds in patients with active Crohn’s disease. Clin Nutr 1995; 14:229-236.

Riordan AM et al. Treatment of active Crohn's disease by exclusion diet: East Anglian multicentre controlled trial. Lancet 1993; 342:1131-1134.

Teahon et al. The effect of elemental diet on intestinal permeability and inflammation in Crohn's disease. Gastroenterology. 1991;101(1):84-9.

Verma S et al. Oral nutritional supplementation is effective in the maintenance of remission in Crohn’s disease. Dig Liver Dis 2000: 32(9):769-774.

Woolner JT et al. The development and evaluation of a diet for maintaining remission in Crohn’s disease. J Hum Nutr Diet 1998; 11:1-11.

I think I found these through a google search. There is also a paper published online in EJCN http://www.nature.com/doifinder/10.1038/ejcn.2016.74 ‘Enteral feeding reduces metabolic activity of the intestinal micro biome in Crohn’s disease: Observational study’.

I am aware they use this with children, particularly to avoid using steroids. I've been told it isn't used for adults in the UK and USA as it is difficult to maintain. Though in Japan nutritional therapy is used widely as a primary treatment for Crohn's.

I don't think it is under a different name. I think you are fine with Ensure Clear.

 

[my little penguin]

Different countries have different rules on what emulsifiers can be added
So it may not be in ensure plus there
It's not in ensure powder version in the US
Or ensure clear
It varies

 

[Susabelle]

I've just done some research and Carrageenan in the UK is denoted by E number: E407.

The ready-to-drink Ensure plus in the UK doesn't have carrageenan

 

[Susabelle]

So I promised an update after I had my next test and I'm so happy to report my calprotectin is now under 30 and completely in the normal ranges :dance:

This means I've done the Ensure Plus diet for 9 weeks. it was tough but it worked

I'm now following the elimination diet (as per Dr Hunters 'The Essential Guide to controlling Crohn's Disease, Colitis and other IBDs) and I've had some plain chicken today.

My dietician is on board which is great, so she will help me do the elimination diet and is very quick to answer emails. I have another consultant appointment on the 18th so will wait to see her reaction, but the results speak for themselves.

So happy the inflammation has been switched off!

 

[ronroush7]

So I promised an update after I had my next test and I'm so happy to report my calprotectin is now under 30 and completely in the normal ranges :dance:

This means I've done the Ensure Plus diet for 9 weeks. it was tough but it worked

I'm now following the elimination diet (as per Dr Hunters 'The Essential Guide to controlling Crohn's Disease, Colitis and other IBDs) and I've had some plain chicken today.

My dietician is on board which is great, so she will help me do the elimination diet and is very quick to answer emails. I have another consultant appointment on the 18th so will wait to see her reaction, but the results speak for themselves.

So happy the inflammation has been switched off!

That is great news.

 

[Susabelle]

Thanks Ronroush, I'm so chuffed.

I was worried last week it wouldn't be under 50, but now it is such a relief. It will be interesting to see what happens reintroducing foods.

 

[ncman]

Hi Susabelle, I wondered how you were getting on?

 

[Susabelle]

Hi ncman,

It has been a bit of a mixed journey.

I stayed in remission whilst on food in the elimination diet for 7 weeks, but then I introduced wheat and yeast, and apparently I'm allergic to wheat - which I'm told is rare to have an actual allergy rather than an intolerance - sods law right?!

So the wheat triggered a flare, which I'm still in because honestly I had a lot of social events and then it was Christmas, so I found it impossible to not eat.

I've been on ensure plus shakes only for 3 weeks now, I feel great again after a bad few months, the inflammation is already decreasing and hopefully I will soon be in remission and able to start back on the elimination diet where I left off (avoiding wheat this time).

I guess I knew it was going to be a long process, but I will get there in the end!

 

[ronroush7]

Hi ncman,

It has been a bit of a mixed journey.

I stayed in remission whilst on food in the elimination diet for 7 weeks, but then I introduced wheat and yeast, and apparently I'm allergic to wheat - which I'm told is rare to have an actual allergy rather than an intolerance - sods law right?!

So the wheat triggered a flare, which I'm still in because honestly I had a lot of social events and then it was Christmas, so I found it impossible to not eat.

I've been on ensure plus shakes only for 3 weeks now, I feel great again after a bad few months, the inflammation is already decreasing and hopefully I will soon be in remission and able to start back on the elimination diet where I left off (avoiding wheat this time).

I guess I knew it was going to be a long process, but I will get there in the end!

I hope you can go into remission soon.

 

[Susabelle]

Thanks ronroush, I'm positive I will get there again

 

[ncman]

Yeah, you've got to be careful with wheat. For me, it was one of the 'slow-burning' foods, which caught me out.

How did they tell you you're allergic? Did you have an allergy blood test done?

Keep going, the method works - I'm 2 years down the line and still testing new foods!!!!!

 

[Susabelle]

Thank ncman, I slipped up and had a Thai green gluten free curry, that was amazingly tasty but made me sick for a couple of days :-/.

I'm currently waiting to see an allergist to see if I have any other issues. My dietician and consultant said it was likely an allergy than an intolerance, I think it was because every time I ate wheat my face would flush red about 1-2 hours later, which apparently indicates an allergy rather than intolerance. I just know I'm hoping they are wrong, wheat free is very frustrating!

I do know I'm getting tired of not having any alcohol (for over a year!) so I'm planning on testing some rum and seeing how I get on with it. Have you found any alcohols you can safely drink?

 

[my little penguin]

Make sure they test your skin (skin prick test ) and blood for IgE levels
Not igG
If you have a wheat allergy they give you an epi pen or auvi -q

And they tell you the signs of Anaphylaxis
So you know when to get an epi
Including a food allergy action plan
https://www.foodallergy.org/file/emergency-care-plan.pdf

http://www.kidswithfoodallergies.org/page/food-allergy-topics.aspx

Past reactions are no indicative of future reactions

Most food allergic reactions happen within 2 hours of ingestion

 

[ncman]

I do know I'm getting tired of not having any alcohol (for over a year!) so I'm planning on testing some rum and seeing how I get on with it. Have you found any alcohols you can safely drink?

I've never been an alcohol person really, but I think the key is to drink distilled spirits like vodka, rum, gin. If memory serves me correctly, go for white rum. I can't remember why but the lighter the colour the better. So vodka should be fine, try flavoured vodka with fruits you can tolerate!

I didn't get on with yeast so beer, wine etc as it is fermented was no good for me.

Look on the plus side - 'testing' gives you an excuse to be drinking during the day!!

 

[ronroush7]

Ronroush, I didn't know about carrageenan. I've just looked on the ingredients on the bottles and it isn't listed on Ensure Plus, so maybe it is the same as Ensure Clear? Or could it be under a different name?

Scipio, it first came to my attention when I read Dr John Hunter's book on IBD. He is now retired but I was referred to one of his colleagues in London when I contacted his old secretary, who I talked about it with, but he also mentioned that it would be less effective with crohn's colitis. In the book Dr Hunter talks about using enteral nutrition (he mentions Elemental 028 Extra in the book) to bring about remission and then use the LOFFLEX diet to maintain. If i remember (as I don't have the book in front of me) he said it should take about 3 weeks to start working, though he had one patient which took 9 weeks to bring his calprotectin into the normal ranges.

My NHS consultant was dead set against it, but luckily the dietitian let me give it a go. Even if the diet alone won't keep me in remission I thought I had nothing to lose by trying - and if it helped, all the better. At worse it is giving my bowel rest and the steroids a better chance of working and since the blood is now gone and the pain has significantly reduced I'm glad I've done it.

When I contacted Dr Hunter's team I did ask for the studies he used to back up his findings and they sent me the following:

Middleton SJ et al. Long-chain triglycerides reduce the efficacy of enteral feeds in patients with active Crohn’s disease. Clin Nutr 1995; 14:229-236.

Riordan AM et al. Treatment of active Crohn's disease by exclusion diet: East Anglian multicentre controlled trial. Lancet 1993; 342:1131-1134.

Teahon et al. The effect of elemental diet on intestinal permeability and inflammation in Crohn's disease. Gastroenterology. 1991;101(1):84-9.

Verma S et al. Oral nutritional supplementation is effective in the maintenance of remission in Crohn’s disease. Dig Liver Dis 2000: 32(9):769-774.

Woolner JT et al. The development and evaluation of a diet for maintaining remission in Crohn’s disease. J Hum Nutr Diet 1998; 11:1-11.

I think I found these through a google search. There is also a paper published online in EJCN http://www.nature.com/doifinder/10.1038/ejcn.2016.74 ‘Enteral feeding reduces metabolic activity of the intestinal micro biome in Crohn’s disease: Observational study’.

I am aware they use this with children, particularly to avoid using steroids. I've been told it isn't used for adults in the UK and USA as it is difficult to maintain. Though in Japan nutritional therapy is used widely as a primary treatment for Crohn's.

You should be ok if it didn't list carrageenan